quote="Frustrated"]I have had RLS for years, but unfortunately it is getting worse. I found out what it was about 3 yrs ago. I have since been to several doctors and now I am at a sleep clinic disorder center. The doctor says I have extremely low Iron and I have been on Chromagen Forte a strong iron supplement. They don't know how long it will take to get my iron levels up to the right level, but hopefully when I am this will go away. I have to believe I will get relief, meanwhile I have taken many drugs to help with the RLS. I am currently taking Mirapex, it seems to work but the last week it hasn't. I have to take a higher dose and I don't like having to increase it b/c I wonder if I will have to again.
I have also been given Ambien and Klonopin to help with sleep. I worry about addiction and long-term effects. Does anyone have any info on this. This seems to be getting a lot more publicity and I hope we all get the help we need. If you don't have it, you don't understand it[/quote
I have had RLS and I am just receiving help
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Rubyslipper
- Posts: 992
- Joined: Wed Mar 24, 2004 2:53 am
- Location: Missouri
I'm so sorry you are going through a bad time. We're all here to help if we can. Just curious, were your iron levels low or your ferritin levels? The ferritin levels are what seem to affect RLS. Hopefully if you can get those levels straightened out, the rest will get better. I take Mirapex and Neurontin and am so thankful that they work for me. The doctor you mentioned, is he familiar with RLS? If not, see if he will do the research necessary to help you or find a doctor who will. Ask to try other meds until you find what works for you. We have all found out that we are our own guinea pigs, struggling to find out what will help. It's a long process and just when you think you have it figured out, it changes. Please don't get me wrong, it is not all gloom and doom. But it does take lots of experimenting. Keep us informed as to your journey.
Thank you so much for responding. I think you all are so helpful and knowledgeable. It is nice to talk with someone who understands. This doctor has told me that he has worked with some RLS patients, but not too many. To me he is my night and shining armor. He listened , he understood and said he would help. I went through the cadillac treatment of tests and he did confirm I have very low Ferritin levels and thankfully we believe nothing else. My levels were around 15.
I was on Neurontin and had very bad side effects. I had never been so down or depressed. I also think I might have been on too high of a dose. Through publicity I found out Neurontin could have this affect on people and I discontinued it. It took a while to get it out of my system. The next medicine I tried was Mirapex. I have already increased my dose once, but I may have to do it again. It hasn't worked for weeks. The sleepling pills I take let me sleep and I am thankful for that, but I don't think the Mirapex is working. As I said I am now taking the vitamin Chromagen Forte to increase the iron or ferritin, I'm not sure and I hope in few months this will work. I don't like having to go through this trial and error, but I guess we all have no choice and it's better than nothing. I will keep in mind that I have to be more open to trying all types of medicine. what a thought to think something might work. Do you know if any of these medicines have long term effects?
I already feel a little better just being able to write this info and know that you understand, everyone else thinks it is so foreign.
Thank for your response.
I was on Neurontin and had very bad side effects. I had never been so down or depressed. I also think I might have been on too high of a dose. Through publicity I found out Neurontin could have this affect on people and I discontinued it. It took a while to get it out of my system. The next medicine I tried was Mirapex. I have already increased my dose once, but I may have to do it again. It hasn't worked for weeks. The sleepling pills I take let me sleep and I am thankful for that, but I don't think the Mirapex is working. As I said I am now taking the vitamin Chromagen Forte to increase the iron or ferritin, I'm not sure and I hope in few months this will work. I don't like having to go through this trial and error, but I guess we all have no choice and it's better than nothing. I will keep in mind that I have to be more open to trying all types of medicine. what a thought to think something might work. Do you know if any of these medicines have long term effects?
I already feel a little better just being able to write this info and know that you understand, everyone else thinks it is so foreign.
Thank for your response.
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ViewsAskew
- Moderator
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- Joined: Thu Oct 28, 2004 6:37 am
- Location: Los Angeles
Trial and error
The trial and error part is one of the hardest parts for me. It can take several weeks to titrate something high enough to decide it doesn't work. During that time, you can be crazily symptomatic. Then you get to switch! Or when things abruptly stop working. Now that's fun 
. Or keeping my little drug and sleep diary of how the different combinations work (or don't work).
Diary:
Night One: Took one part of eye of newt, 2 parts of horse testicle, and mixed it with warm bath water. Slept badly, woke 5 times, and had dreams I was Catherine the Great.
Night two: Decided to try two parts of eye of newt this time and leave out that nasty horse testicle!
. No more dreams of Catherine, but I didn't sleep at all. Next. . .
Ann, being exceedly silly in Illinois
. Or keeping my little drug and sleep diary of how the different combinations work (or don't work).
Diary:
Night One: Took one part of eye of newt, 2 parts of horse testicle, and mixed it with warm bath water. Slept badly, woke 5 times, and had dreams I was Catherine the Great.
Night two: Decided to try two parts of eye of newt this time and leave out that nasty horse testicle!
. No more dreams of Catherine, but I didn't sleep at all. Next. . .
Ann, being exceedly silly in Illinois